The Total Life Learning curriculum was developed for students ages 3 to 22 who are blind, visually impaired including those students who have additional disabilities or are deafblind. The focus is on the development of life and career goals that enable student to maximize independence, self-determination, employability, and participation in the community.

“Don’t be hampered by a fear of the journey. The challenge isn’t necessarily the journey, but choosing the right path”. ~ S.L. Young

I have recently realized that I, as a parent, need a path to transition. We have just begun a college search for my son. This is not my first rodeo of college applications, financial aid packets, and campus tours. In fact, it is my third. But this time is different. This time, my youngest child, my son with the disability of deaf-blindness, the child who has defined who I am today, is heading off to college.

As my husband, son, and I began the 3-hour drive to attend “Transfer Tuesday” at Hunter’s first choice of schools, I could sense his anxiousness. To put him at ease, I described the beautiful colors of the fall foliage—the brilliant reds, the burgundy that was almost purple, the oranges, and the many shades of gold. He remarked on how the yellow and gold gave some brightness to his vision.

As we continued north on the Pennsylvania turnpike and I complained of the never-ending road construction, Hunter informed me that our state had received grant funding to improve highway access and mobility. Who knew? That is when it occurred to me that my astute and aware son does not need me as much anymore. Somewhere, somehow, he became my teacher. Now, as he takes charge of his own life, I need to move on to the next stage of mine. I need a path to transition.

My son has taught me to:

Embrace diversity

Work hard not only for yourself, but for others

Prepare in advance for obstacles and barriers and have a working plan in place

Set goals and priorities according to importance and need

Try harder; don’t just give up and walk away

Be flexible

Know when to let go and move forward, never looking back

Be respectful, gracious, and allow yourself time to process what is happening around you

Recognize your self-worth and be confident in who you are

Be brave, even when you don’t feel brave

Once we arrived at the university, my son was joined by two other potential transfer students. A young woman, who planned to study nursing, came alone. A young man, interested in a computer science, came with his father. Selfishly I thought, “Thank goodness another parent is here!” The admissions counselor began with a slide presentation about the university and she called my son by name. I wondered how she knew that he goes by his middle name. All of his paperwork states his first name, his legal name. I asked him about it and he told me that he had met the admissions counselor the previous week at a college fair offered at his community college. Of course he had. He is now taking the lead on his own path. I need a path to transition too.

Following the presentation, a happy, energetic student ambassador came to take our group on a campus tour. We, the parents, followed behind the students as the guide described the buildings, the classrooms, the library, the gym, the field, the dorms, the meal tickets, and more. The tour lasted for two hours. The student ambassador—a great sales person!—told us how happy she was at the university. Yet all I could think about was how large the campus was. I finally asked Hunter, “Do you think this is too big of a campus for you?” He simply said, “Mom, it will be fine. It’s just a big circle.” He was correct, but how did he know this? Neither I nor his vision teacher had talked to him about the layout of the campus. Now, he was teaching me . . . reminding me once again that he is doing great and I need a path to transition.

After the tour, we broke away from the group so Hunter could attend a meeting he had arranged with the counselor of the disability office. Throughout his life I’ve had a mantra that has guided me—I will advocate for my son, I will advocate beside my son, I will advocate behind my son—meant to remind me that as he progressed towards adulthood, I would gradually decrease my advocacy role on his behalf as he took over. Now, as I sat quietly at the table and listened to my son speak with the counselor, I realized that he was in total control of his own self-advocacy. He does not need me, but I still need him and I need a path to transition.

As I plan the next phase of my life, I will set new goals. I hope to continue to use my advocacy skills on behalf of other children, youth, and adults who are deaf-blind and their families. I know I will continue to seek information, gain knowledge, find new resources, and pay forward everything I’ve learned from others in the hope that it creates an easier road for someone only steps behind me. The best course for me as I transition through this major milestone in my life will be to honestly apply everything my son has taught me during the journey so far. He has been a stellar teacher in more ways than I could ever have imagined.